OUR JOURNEYS

Memorial story

Emily Grace

by Nancy Thompson

Emily Grace was born at 29 weeks on May 31, 2006. She had many problems, and was in the NICU for almost 3 months. She had severe chronic lung disease and developed pulmonary hypertension shortly after birth. She had 3 holes in her heart, which served as "pop-off valves" for the pressure in her lungs, but she was never able to keep her oxygen saturation level up like it was supposed to. She was treated with nitric oxide in the NICU and we were told the pulmonary hypertension was gone. We never received any patient education on chronic lung disease or pulmonary hypertension.

Emily overcame many challenges while in the NICU. She had surgery for a hemi-diaphragm and came through that like a champ. She spent a long time on a ventilator and had severe reflux and many other problems. She finally was allowed to come home on August 27th. She came home on an oxygen saturation monitor, apnea monitor, oxygen, and an NG tube. She also had a nebulizer for breathing treatments twice per day. Our instructions upon leaving the hospital included to spot check her several times a day with her oxygen saturation monitor and keep her oxygen set at 1/8 liter. Do not increase her oxygen. Follow up with her cardiologist in 1 month.

On Sept. 26, we had our follow up visit with the cardiologist. Emily had maintained an oxygen saturation level at 85 and above most of the time. The cardiologist did an ultrasound and found major pressures on the right side of her heart. We were then instructed to turn her oxygen up as much as it takes to keep her at 94 or higher. This worked really well and she stayed between 1/4 liter and 1/2 liter until October 19, 2006. All of a sudden, her O2 sats started dropping into the 70's. We took her to the Emergency room at the children's hospital.

Her cardiologist did another ultrasound once the hospital got her sats back up, but they had to put her on 2 liters of oxygen to get them to stay up. The pressures in her heart were so high that the doc told us if she didn't have the holes in her heart, she would be dead. Emily was put on Viagra and sent home. The very next day, we had to take her back to the hospital. This time, Emily was admitted to the Pediatric ICU. Her Viagra dose was increased and we were again sent home. That was on Wednesday, Oct. 24. On Friday, we visited the cardiologist and she did another ultrasound, said that Emily was doing better and increased her Viagra again. We brought Emily home and were so proud of her for getting better. But early Monday morning, she dropped her O2 sats into the 30s and we were back at the hospital. She was put back in the PICU and was observed for several hours, then she was put back on the ventilator, and soon after was sent to Vanderbilt Hospital in Nashville, where there is a great specialist who does a lot of work with PAH patients. Unfortunately, we were too late. She was given a paralytic to keep her still and to keep her from breathing on her own, so that her lungs could "rest". She didn't improve, so she went on ECMO. After this, she never recovered. She went to be with Jesus on November 14, 2006.

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